We have been asked our opinion on the so-called MEGA study which patients are being asked to support by signing a petition.
From the little information we can ascertain -
We believe this will, if it gets accepted, suck away all funding for ME research for the next few years and give an impression that something is being done that will produce benefits for people with ME.
Yet we do not have confidence that this will lead to any effective remedy for people with ME.
A lot of data is proposed to be collected on a broadly defined patient cohort.
What is this data being used for?
It is stated –
“If we do this, we think we may be able to develop new treatments. We also think we may be able to target treatments more effectively for those that will benefit.”
We wonder what treatments they are thinking of developing whilst including those investigators who believe that ME is a faulty illness belief amenable to changing one’s thoughts.
We feel the petition has no other meaning but showing an element of patient public involvement.
And we also wonder if this proposal has already been accepted by some in positions of influence and that this petition may be mere cosmetics rather than substance.
There is no description of how “ME/CFS” patients are diagnosed before entry. Are there enough trained doctors to diagnose 12000 ME patients in a consistent way or can anybody with unexplained fatigue put themselves forward?
This resembles the shambles of the PACE Trial again and patients are already falling for it.
The history of MRC policy toward ME does not engender trust – numerous “expert” panels that produced nothing, PACE Trial funding, funding of research into other illnesses such as Sjogrens under the banner of ME research – yet we are still no wiser, patients are still ill.
We have already requested that the MRC refuse to allow grant applications from, or provide funding to those investigators who were involved in the flawed PACE Trial. This project proposes some of those behind PACE or supporting it will be involved.
We have no confidence in these people.
Like a sinkhole we feel this will suck away available funding for ME - and also remove many years of additional opportunity for good research.
We feel this is yet another way that patients will be given a line that something is happening – yet based on the experiences of the past it will be just more years waiting – and then little to show for it other than to benefit some whom we feel should not be involved in research into ME and some organisations.
Having scarce funding sucked away like this is one thing – losing more lives to it through delays is another and we cannot accept that.
This research will take years and require so much further analysis that it is difficult to see how it benefits patients any time soon.
We cannot support this.